Peeing like a sumo wrestler …

Tuesday October 30th – 28 days after diagnosis; 6 days after surgery

It was four weeks ago today that I was given the news I had cancer.  A short period of calm descended, before the strange surreal limbo kicked in.   My limbo was in part characterised by thoughts of doom and gloom.  Now, I’m a psychologist; I know a thing or two about catastrophizing.  Catastrophizing is an unhelpful thought process – thinking or believing a situation or experience to be far worse than it actually is.  For me, on being told “cancer of the vulva”, what I heard was:

  • op tableYou will die on the operating table and this will leave your children traumatised for the rest of their lives
  • If you don’t die, the cancer will have spread to nearby organs and you will have to have your bowel removed and have a stoma
  • If your bowel isn’t removed, you will be doubly incontinent

I am an intelligent, (usually) rational woman who reads widely and educates herself about many matters – both professionally and personally – in order to be better informed and take some ownership.  None of these scenarios featured in any of the literature or research papers I read.  Yet they became very real, dominant and troublesome thoughts which fuelled my anxiety and paralysed me. These irrational thoughts dissipated somewhat on consultation with my surgeon the day before surgery. They returned with a vengeance accompanied by uncontrollable sobbing and hyperventilating as I met with the anaesthetist just before surgery.

sumoI lie here tonight, six days post-surgery, somewhat bemused by my reflections on the past four weeks.  I have little pain.  In fact I am generally in less pain than I was prior to surgery.  The “must have” waterproof mattress cover has not ventured out of its packaging.  Sitting is still a bit of a no-no  – that IS painful – as is coughing, sneezing and over exuberant laughter.  I have mastered the art of peeing standing up.  Not like a regular bloke, more a semi-erect semi-squatting sumo wrestler pose – less chance of pee stinging my particular wound.  I was a bit zealous with the advice of using a shower head to keep the wound clean initially; getting in the shower every time I had a pee.  This transformed into peeing while in the shower (“dirty, dirty habit” as I seem to recall telling at least one of my children!) for which I feel no shame.  I’ve curbed my 10-12 showers a day habit down to around four.

hairdryerEach shower is followed, as instructed, by a “blow dry” of the wound with a hairdryer on the coolest setting.  My new ritual continues with lying on my bed, legs apart.  Thoughts (or memories) of any carnal pleasure in absentia, ousted by the sheer pleasure of just being naked and knowing this is the best medicine for a healthy healing wound.  Knickerless I remain, as advised by the surgeon and other vulval surgery survivors on Twitter! Those extra big M&S knickers may never see the light of day again.  The two sizes too big jogging pants, bought to accommodate the imagined huge continence pads and massive swelling, will be returned unopened too!

fartThe thought of having a pooh was terrifying, if somewhat distantly familiar.  I recall my fear as a new first time mum, post episiotomy, that if I stood up or tried to open my bowels the entirety of my internal gastrointestinal system and bladder would end up in the toilet bowl.  Apparently I was susceptible to catastrophizing 28 years ago!  In reality, it is fine.  I am taking some laxatives and drinking plenty to keep things moving.

Other than a very short stroll, I haven’t ventured out of the house yet.  I tire very quickly.  Today was the first day on which I felt emotionally low.  I guess the limbo is still there – minus the catastrophizing.  I feel unable to look too far forward, to make plans.  What I need now is the diagnostics, the prognosis and a road map for treatment; that may be another 2-3 weeks.

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Family …

Saturday October 27th 00:30am  – 23 days after diagnosis; 55 hours after surgery

21Tonight you will find me on my bed with my legs akimbo under firm instructions to let the air circulate around my wound (I have had four showers in the nine hours since arriving home from hospital).  I was in much the same position exactly 21 years previously, as we welcomed Amy Susan into the world. I am unsure on which occasion I experienced most pain, but whatever pain I experienced 21 years ago was almost immediately eclipsed by the joy Amy brought to all our lives.

tazAmy was a whirlwind, a Tasmanian Devil, always smiling, laughing, curious, doing.  She hasn’t had the easiest of times; she has wrestled with much yet developed into the most amazing, compassionate, wise, young woman.   The last 18 months have been especially difficult.  Her brother had testicular cancer, her grandmother skin cancer and then to top it all off – I go and bugger up her birthday celebrations by being called in for vulval cancer surgery.

Amy and I have a special bond; we have spent a lot of time together.  We have shared a lot – and there is still little that is not shared between us.  I know her biggest fear is me dying, and I know she feared me dying on the operating table on Wednesday.  I did not want to “bother” her, or Emily or Joseph, with my surgery.  I did not want to interrupt their busy lives or cause a fuss.  I seriously considered not telling them.  But my wise sister queried what if the worst did happen ….

bunsSo Joseph and Amy were here with me when I went in for surgery.  On the eve of her birthday Amy welcomed me home from hospital with home baked cinnamon buns.  Tomorrow Emily will arrive and spend a few days with me.  My mum and dad live close by and my sister has been a rock on which I have had to depend in a way I am very unused to doing. The knicker beast is banished – for the time being at least.

Whatever the future holds, I have been blessed with the most wonderful life in which my family and my children have always been at the heart.  I know only too well from the many families I have worked with that this is a special gift to be cherished dearly.  And cherish it I do.  The unconditional, sometimes unspoken, love we share as a family has sustained and nourished me through some incredibly difficult times.  Such love has wondrous properties.  I am a very lucky woman.

Kinky Boots versus Kill Bill: the night before the knife

Tuesday October 23rd (just before midnight) – three weeks after diagnosis

consent.jpgAn air of calm has descended; I’ll take that for however long it lasts – probably until lunch time tomorrow.  Today I met with my consultant surgeon.  He calmly explained my procedure – the purpose, the risks, my right to choose … and asked me to sign on the dotted line that I understood all that he had said.  Tomorrow afternoon he will skilfully wield his scalpel to carry out a wide local excision of my vulval lesion.  The purpose of this procedure is assessment, diagnosis and treatment.  The risks are excessive bleeding, infection, damage to adjacent structures (particularly nerves and blood vessels), wound infection and breakdown, DVT and pulmonary embolism. In my head he is Uma Thurman brandishing a massive sword to annihilate the nasty knicker beast. kill bill.jpg

The consultation was followed by the taking of blood, an ECG and instructions on fasting (nothing after 6:30am), and that was it! Out by 12:30 with instructions to return around 11 the following day.  So – what to do with this unexpected afternoon of pre-operative freedom?  Well lunch seemed a good start.  Pasta at Prezzo on the seafront at Mumbles with my sister, courtesy of Meerkat 2 for 1.  It was a glorious day – sunny and warm andmumbles comforting.  A gentle stroll along the seafront calmed and distracted me.  A mooch around a lovely little gallery and the local shops, an unexpected glimpse of the gem which is Oystermouth castle, followed by coffee and cake.  I held on to that preciousness for as long as I could, until I could ignore the nagging, gnawing of the knicker beast no longer.  Time to head home and have a rest.

And rest I did. A massive 3 hour nap. I was still relatively calm, though somewhat preoccupied with an urgent desire to evacuate my bowels which was not accompanied by any bodily urge.  The thought of having my vulva sliced and stitched, and still having to pee and pooh just did not compute.  How is that even possible?  How much agony will I have to endure? How in the hell do you keep everything clean, heal and recover?  Amongst the messages of good luck and warm wishes were some gems on Twitter from @gencritlou and @hurtieh .  I am so appreciative of these two women who took the time to respond with their supportive words and advice following their own recent surgery.

I am nearly 5 weeks post my own vulval cancer surgery and it wasn’t anything like as bad I’d feared. I got through and so will you.

I’m 2 weeks post WLE, pain wasn’t too bad, […]  All in all, my bits are less painful than they were before the surgery! I hadn’t realised how uncomfortable I was ALL THE TIME!  Spent most of the first couple of days lying down, short walks around the house etc. I just had to be careful and slow sitting down, getting out of bed etc. Showered lots, just plain water, no fancy dancy gels etc.

Advice absorbed, I sought to distract myself for the evening.  After much trawling through my on demand services, I settled on Kinky Boots. What a gem!  I was taken to kinky_boots_postcard_9822.jpganother place, the fictional, yet all too real, challenges of the lives of other people accompanied by a fabulous soundtrack.  Note to self: download favourite music before tomorrow.  Kinky Boots was followed by a heart to heart chat and plenty of cuddles with my youngest daughter who arrived home, with my son, a little after midnight.

This time tomorrow, the knicker beast will be gone.  This will either be a total victory, or the first win in a series of battles.  I cannot change the trajectory that is laid before me, but tonight, thanks to all those wonderful people around me – including those who have reached out across the web – I feel in a better place to take on the challenges ahead.

 

 

Sarah Millican, Sigourney Weaver and the parasitic knicker beast

Tuesday October 23rd (the wee small hours) – three weeks after diagnosis

prisonI’ve lived the last two weeks in some strange existence of near physical immobilisation brought about by uncontrollable racing thoughts all competing for my attention.  The result – I was totally overwhelmed.  I found it difficult to leave the house, to reply to emails, to prepare for what lay ahead.  I lived in a limbo, imprisoned by thoughts of doom and gloom, and my failings, as a mum, to protect my children from this shit.

Becoming a mum, a little over 28 years ago, was the making of me.  There has been nothing in my life to match the pure joy and meaning my children have brought to my life.  I think I was a good enough mum – far from perfect – but my children were always there at the centre of my life, and still are, even though we are scattered across this land.  I would have given anything not to put them through the anguish they are experiencing just now.

red weightMy appointment with the oncologist just 11 days ago was rather surreal.  It was almost as though I had an out of body experience.  Who was this poor women, who could not stop crying, who was hyperventilating, who could not string a sentence together?  I thrust my typewritten notes at the surgeon and relied on my sister to fill in the gaps.  He attempted to assure me with scientific fact that my tumour could not have grown at the rate I had said – this was my perception, because I was more aware of it.  I gave him the benefit of the doubt.  Hey – I’m a psychologist; I understand subjectivity and perception.  Now 11 days later I still feel like I have this rampant parasitic beast growing exponentially between my legs.

Sigourney-Weaver-as-Ripley-in-Aliens-alien-aliens-8255352-800-1213.jpgMy inner voice transformed into Sarah Millican delivering an endless barrage of fanny jokes.  This seemed fitting given the endless barrage of one bollock jokes delivered in the style of Gary Delaney by the best man at my son’s wedding last year.  It further transformed into some heavily armed hero type – think Sigourney Weaver in Alien or Bruce Willis in Die Hard – screaming “Die you mother f**ker” at that which lurked in my knickers.

The oncologist, following yet another impressively quick peek at my crotch, confirmed that this needed to be gone and I would be brought back for surgery within the next four weeks.  It may be sooner – but four weeks was the usual.  Did I have any questions?  Yes, yes, yes!  Could I process the information he had given me and formulate a coherent one?  Could I hell.  What I know is that the tumour will be removed, it will be tested, I may need more surgery and/or more treatment.  It is uncomfortably close to my bum hole – and that may cause complications.  There is a 50% risk of the wound breaking down through infection.  No wonder I spent the next 10 days in mental turmoil.

kisspng-cartoon-stock-illustration-mobile-phone-clip-art-call-the-woman-5a9a42e990f0f7.6901019815200591135937Then yesterday, around 2:30pm, I had a telephone call.  Was I sitting down and did I have a pen?  We have a date for you – it’s Wednesday 24th.  We need you to come in tomorrow at 10am. Meltdown.  Absolute meltdown.  Shaking, crying, snot all over the place.  Fear, anxiety – vulnerable.  I rang my calm, collected sister; her no nonsense, straightforward talk calmed me.  Well calmed me enough so that I could do what I needed to do.  Some urgent emails – cancelling this and that, postponing something else.  Then calling the children – to be met by their anxiety and fear.  More paralysis – unable to think.  What do I need to do?  A quick dash to the late night supermarket to get the essentials – a bar of Galaxy to gorge myself on before the nil by mouth kicks in.  An evening with Victoria Wood while I gathered my thoughts and allow some calm to descend.

My alarm is set for 7am.

What happened to me?

food plate chocolate dessert

I have cancer.  It is newly diagnosed.  I am shit scared.  I keep bursting into tears. I have palpitations and trouble catching my breath.  I shout, I rage, I swear.  I self-medicate with food.  I tremble and shake.  I have trouble remembering, finding words and concentrating.  My sleep pattern is fucked – I survive on a series of naps.  I worry, ruminate.  Now – you can diagnose me with a number of mental health disorders if you wish, but my “symptoms” are a reasonable (if unhelpful) response to a very real threat.

It is World Mental Health Day.  I sit here today with all these “mental health symptoms” alongside my physical diagnosis of vulval cancer.  But I had these symptoms before my diagnosis too.  I lived with these symptoms for more than thirty years.  They were largely hidden from view.  If you knew me back then you would not know about my symptoms.  Well – you may have guessed I self-medicated with food, or you may have judged me to be fat and lazy.  There were times I self-medicated with alcohol too.  You may have thought me to be unreliable or antisocial.  I often turned down invitations to social events – or just didn’t turn up.  I was often “on the sick” with minor ailments.  I changed my job frequently.  You may have thought me to be “moody.”

gender

You would not have seen me crying inconsolably as I feared the day ahead.  You would not have seen me hiding in the toilet throwing up, my stomach screaming with nerves and dread.  You would not have seen me sitting in my car for half an hour trying to pluck up the courage to go into the supermarket.  You were not inside my head witnessing the incessant self-questioning and castigation.

I never told anyone about my “symptoms” because I didn’t know they were symptoms.  They were just me, part of my personality, who I was.  I functioned.  I got by.  I thought this was life – just how it was.  Much of the time I will have appeared sociable, competent and happy.  I was happy – some of the time, particularly when I was with my children.  Yet I lived my life feeling as though I was a freak, I didn’t fit in, there was something inherently “bad” about me.

Would a diagnosis have helped? Did a label of “depression” help when I could no longer hide my symptoms, when I could no longer function, when I could barely get out of bed to take my children to school?

Perhaps it did.  That label did bring with it some acknowledgement, some validation.  It was a gateway to therapy and, eventually, to understanding and self-acceptance.  I learned that I was not “bad.”  I learned that I was courageous. I learned that I had coped the best that I could with the hand that I had been dealt. I learned that my behaviours were a response to the experiences I had early in my life.  It was not my fault.

Today, I am stronger for my experiences and my understanding.  Today I can yield to my symptoms, without fearing I am going “mad.” I can have a bad day.  Today I have healthy coping strategies.  They will get me through the difficult journey ahead.  There is nothing “wrong” with me – though from time to time I am “not ok.”

adorable baby beautiful bed

I look forward to the day when it is universally acknowledged that mental health difficulties are as much, if not more so, a response to life’s challenges – the crap that we encounter – as they are to some failure in our biology.  We already know how our experiences can change our biology, the structure of our brains.  More so – we know what “good” looks like in nurturing healthy children, which is where our focus needs to be. While my experiences have made me the now resilient, positive, fulfilled, authentic me – I would not wish that thirty years of a life half lived on anyone.

 

 

Wonder Woman and the Big Knickers

Tuesday October 9th – one week after diagnosis.

I have been overwhelmed by the response to my first blog post.  Such warm, thoughtful, supportive messages from friends, colleagues and people whose lives I have touched – some who I have never met.  It is these messages that have taken me aback.

“You have inspired me so many times through your posts”

“So sorry to hear you news your an inspiration to all now get your big girl panties on and kick cancers butt”

“You are a strong women, that has inspired so many troubled individuals. Myself as a teenager included in that list you help.”

“Your blogs are so inspiring and heartfelt and they raise so much awareness…”

“Not a truer word spoken. U did help so many young people and made school that tiny bit more bareable.”

wonderwomanWho is this Wonder Woman I am reading about?  She is far removed from the woman I see when I look in the mirror!  I do not recognise her as the woman who climbs into my bed each night filled with self-doubt.  She does not resemble the simple soul who just plods through life trying not to cock things up and hoping she is just about doing ok.

jellyWhile I wait for my existential crisis to fully kick in, sitting here like a quivering plate of jelly, intermittently bursting into tears, these messages calm me, give me succour and even bring a smile to my snotty, tear stained face.  While the debate continues on the good and evil of social media, thank you – for taking the time to message me. Thank you for letting me know I have made a difference.

There is a message here for everyone though.  We do not know how we touch people’s lives.  Our actions, our words, our presence can do harm and do good.  I know I have done harm in the past, particularly in my younger years – and for that I am truly sorry.  But I hope, by being true to myself, by being respectful of others’ experiences, I now mostly “do no harm.”  I am privileged and humbled to have shared in so many people’s journeys in the last thirty years.  If I have been able to make a positive difference, that is because those people have taken a risk and allowed me into their life and connected with me on some level.  Any betterment is because they took that risk.

telephoneI’m living a strange surreal limbo just now.  Just waiting … waiting to know what I can expect of life going forward.  Can I expect a life going forward? What happens next?  When you are frightened and just want a simple answer to a simple question, everything seems like a hurdle and becomes so overwhelming.   Trying to physically speak with someone at the hospital was nightmare. I was snared in a vicious circle of answerphone messages.  How many people does the NHS employ? Can one of them not pick up the phone and answer a question?

My wonderful GP acknowledges the shit “patient journey” explaining that he has no “secret numbers” through which he can access information either. I was a wreck, shaking, crying, helpless – and yes, angry and frustrated.  Luckily I have my sister.  We have spent more time together in the last week than in the last fifteen years.  I am grateful for her coolness, her focus, her distance (though not indifference).  She did what needed to be done via Lisa, or Debbie, or someone in “Complaints” and got the answer I needed. I will know nothing before 10th October.

big knickersWith that news came some calm, some purpose – a shopping trip to prepare for all eventualities.  A purple fleecy dressing gown, purple slippers and big knickers.  Not just any big knickers – these are M&S big knickers …….  Having successfully lost 4 stone in the last couple of years and proudly squeezed myself into sexier (!), briefer briefs, the big knickers thing is a bit of a bummer.  To be fair the sexier, briefer briefs have seen no action in the last few years.  Whatever the future holds I am guaranteed a lot more going on in my knickers over the next few months.  Admittedly – not the sort of action I have dreamed of – but action there will be.

Action there is now, as this thing grows and bleeds; a daily reminder that I am “not ok.”  An Elastoplast and hug to make it all better just ain’t going to cut it.  So, shit scared as I am, I am also surrounded by positive cancer stories.  Paul (my ex) and his dad’s recovery from prostate cancer nearly 15 years ago.  Joe, my son, and his recovery from testicular cancer in January this year.  I can say now I never fully appreciated what they went through – how could I?  Joe bravely shared his cancer journey, giving hope to others.  I will, less bravely, share mine.  Yes, I hope to raise awareness of vulval cancer, but in truth this is my self-indulgent way of coping and I’m not apologising for that ….

 

The sorry state of my lady parts …

Image result for gynaecology image cartoon funnyTuesday 2nd October 2018.  A mature (more mature than me ….), bespectacled consultant gynaecologist, donned in white with latex gloves, with the now requisite nurse chaperone in attendance, gently teased his fingers where no man has put his fingers for quite some time now … No more than 30 seconds; that’s all it took.

“I’m not going to beat around the bush (I presume there was no pun intended ….). You’ve got cancer.”

For fuck’s sake Cancer – will you just do one.  Quite frankly, this is so damn unfair on my children.  Fourteen years ago they had to live through their dad’s prostate cancer.  Who the hell has prostate cancer at 41 years of age?  In the UK that’s just 3 men per year in the  40-44 age bracket. Pretty special huh? With grandad and great uncle having had prostate cancer too, it was pretty clear that there was some genetic element in this cancer. My bright, then thirteen year old, son realised that this may in the future affect him too.

At the age of 25, Joe began PSA testing.  Everyone knows outcomes are better if we catch the bugger early.  Being vigilant was the key.  And he was vigilant. He had his PSA checked again around his 26th birthday. Before he reached his 27th, just 6 weeks before his wedding, some shitty, unjust, cruel twist of biology dealt him his cancer blow.  No – not prostate cancer. For Joe it was testicular cancer.  Now testicular cancer is much rarer than prostate cancer, but it is a cancer of young men.  In the age range 25-29, there are 386 cases diagnosed a year in the UK.  Crucially – survival rates for testicular cancer are very good – 98% five year survival.

So 2017 was a pretty shit year for Joe – though there was an amazing wedding!  There was surgery and gruelling chemo.  It was tough too for his sisters, his wife, his grandparents, his dad, me and the others who care about him.  You feel helpless when the person you love has cancer.  You want to take it away from them – and you can’t.  You just have to be there and watch them suffer.

2018 was going to be a great year.  In January Joe was told that the chemo had been a success – onwards and upwards.  Yet here we are, just eight months later. In keeping with family tradition – another fairly rare genital cancer!!

I have vulval cancer.  Only 1339 cases a year in the UK; only 102 a year in women in my age bracket (55-59).  Now I’m no statistician – but what are the odds of this shit run happening in one family?  “Unlucky” doesn’t quite cut it.

To be honest, this hasn’t sunk in for me yet.  I left my appointment on Tuesday, accompanied by my sister, broke the news to my mum and dad, bought chocolate, a new duvet, went to the pub, and had the best night’s sleep I’d had in ages.  The anxiety with which I had been riddled for weeks just lifted – I now knew what I was dealing with.  But my thoughts then turned to my children.  How the hell were they going to cope with this again?  I know we will all cope, but I would give anything to spare them the anxiety they will experience as I go through whatever treatment I need to kick this fucking disease into touch.

Venting, shouting, raging, writing – these are my coping mechanisms.  Mute me in your feed if you don’t want to hear about the sorry state of my lady parts, or my anxiety, my lack of courage or existential crisis.  I’ve been on some unpleasant, challenging journeys in my time, and know this will be the most challenging yet …

You can find out more about vulval cancer here and here .